Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Sunday, April 4, 2010

Easter 2010

Happy Easter!

The kids loved the auto-picture function on the camera. I think we got some of the best family pictures we've attempted in a long time! They loved the anticipation of the flashing red light and were anxious to see if I'd make it back to the family before the blinking stopped and the camera clicked!! The wonders of technology. Cheeeeeeeese.

We had a great Easter filled with colored eggs, rabbit books, candy, and most importantly, many discussions about the resurrection of Jesus Christ.

Benson is excited for Spring break to be over and to get back to school. In his words, "I LOVE SCHOOL!!" Hopefully that excitement will last for another 12+ years!

Claire's been having issues with her dialysis catheter this weekend. She has an infection on the outside of it and has been on antibiotics since Tuesday. But it doesn't seem to be getting better. It's been bothering her a lot this weekend. She's normally doesn't touch her catheter at all, but the past few days we've been hearing the words "my catheter hurts" again and again. She's been picking at it a little, but I'm sure it's because it really is bothering/hurting her. She wouldn't just do that just because. Tomorrow we'll have the doctor check it out but my guess is that they will most likely remove the catheter some time this week. We've been keeping it in for blood work so she doesn't have to get poked 1-2 times a week for labs, but I think it has just about filled it's purpose. The cuff that's supposed to hold the catheter to the inside of her skin has also come out, so I really don't think they'll keep it in long at all. We'll see what the week brings.

6 comments:

Tasha said...

I love the family picture! I hope that all goes well with the catheter.

Philip, Melissa, & Summer said...

The family picture is really nice. I need to learn that function too.

~adelle said...

What a cute family picture. The picture of the catheter is not so cute. :) Glad I am not a nurse. Ewwwe. I hope that they can take it out and the the blood work goes okay without it. Happy Easter to you all.

Anonymous said...

cute family pic, the kids look great isn't it funny that they can look so good when there is something really wrong with them!!!

Momma bear said...

I don't know why it left an anonymous posting I'm karen mom to Tony and J'naya both who have PH1 my blog is at mommato4babiesand3angels.blogspot.com hoping we can get to know eachother and talk PH1!! Since your the only other person who has kids with PH1.

Katie Wells said...

Beautiful family!!